We are really only about 3 months or so behind where we should be. That means Nathan has been developing at an even pace; keeping up since his 9 month old well child visit. I'm so grateful that Nathan's only behind other kids his age in terms of the length of time he's spent as an inpatient in the hospital. After Nathan's total cleft palate repair in February, we will also be having a speech therapist coming to our home to work with him.

The yucky part of the visit is that if Nathan's tortocollis doesn't get significantly better by his 15-18 month well child visit, Nathan will be sent to a specialist to have Botox injections to loosen his neck muscles.

The best part of the visit? Dr. Bennett gave me permission to place Nathan in a forward facing carseat! Nathan's muscle tone and control in his trunk and head are great. He explained that since Nathan is getting closer in the weight and the muscle tone look good, Nathan can get a new seat! I think that I'll take him out of the infant carrier after we get back from Janice's.

Its nice to be told by one of the doctor's that we are doing a good job in helping Nathan progress.

4 comments:

I am sooo glad to hear of his progress. It was also nice to not hear of a zillion things that are problems and that he needs this or that surgery or procedure or whatever to be done. There is actually progress! Yeah! ! ! Good job!

CHD Awareness

1 in every 120 babies are born with a heart defect. What if that ONE was YOURS?

Our Little Man

We unknowingly became elite members of a world no one wants to be a part of on January 22, 2008 with the birth of our little boy, Nathan, but looking back we can't imagine life any differently. Nathan has had to endure 21 surgeries in the first 25 months of his life including open heart surgery for Tetralogy of Fallot, jaw surgery at 3 days old, 5 cleft surgeries and many surgeries involving his airway, ears, and eyes. He has a g-tube which he uses as his sole source of nutrition. In February 2010 he underwent a second jaw distraction as he was showing signs of right heart failure.

Nathan is our little hero; our witness that prayers are answered individually and that we couldn't be blessed with better family and friends to support us.

A Heart Mother's Poem

One day my world came crashing down,I'll never be the same.They told me that my baby was sick.I thought, "Am I to blame"?I don't think I can handle this.I am really not that strong.It seemed my heart was breaking.I have loved him for so long.I will not give up on this child.I will listen to your advice.I will give my son any chance.No matter what the price.I will learn all that I needTo help my baby thrive.I'll even use that feeding tube.My child must survive!Will he need a lot of therapy?Will he gain the needed weight?Please God, help me do this.As I accept our fate.When the monitors beep at night,it serves as my reminder.How many parents would love that sound.Tomorrow I will be kinder.As another Angel earns his wings,I run to my baby's bed.I watch him sleep for quite a while.I bend down and kiss his head.I cry for the parents whose hearts have been broken.I look to You wondering why?Oh Lord, I just can't know your ways....no matter how I try.And yet, I trust you hold his life,and guide us through each day.My mind says savor each moment he's here,but my heart begs, "PLEASE let him stay"!From pacing the surgical waiting room,to sitting by his bed.From wishing for a good nights sleep,to learning every med.From wondering, "Will he be alright?",to watching him reach out his hands.With every smile my heart just melts,despite life's harsh demands.For all who see that faded line.I look to them and smile.You see my child is loved so much.I would face ANY trial.That scar I trace with my finger(It's the door to his beautiful heart).God must have known how much I'd love him(Just as He loved him from the start).A heart mom is always a heart mom.Now wise beyond her years.For those who have angels in heaven,Our hearts share in all of your tears.Every day I will try and remember,I was chosen for him (and no other).I will always embrace that beautiful day.......When I became a "Heart Mother".~Stephanie HustedMommy to Braeden HLHS post FontanCarepage name: babyhusted

HEART POEM

I "borrowed" this poem off of another blog. I'm not sure who the author is, but it truly touched my heart.(Original version found at http://garyandcamille.blogspot.com Thank you!)Heart Poem:

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart. Enjoy your time with your family, play and laugh everyday. And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."